July 17, 2024

Vitavo Yage

Best Health Creates a Happy Life

Parkinson’s Disease Devastates Sleep for Patients and Caregivers

4 min read

Summary: A new survey by PD Avengers reveals that 96% of Parkinson’s disease patients experience sleep disruptions, with over a third of caregivers also affected. Conducted from March 15 to May 15 in collaboration with AbbVie, the survey highlights significant nighttime symptoms and the urgent need for better care and support for patients and caregivers.

Key Takeaways:

  • High Prevalence of Sleep Issues: 96% of Parkinson’s patients report sleep disruptions, averaging 2.75 disruptions per night.
  • Impact on Caregivers: Over a third of caregivers experience significant sleep disruptions, affecting their emotional and physical well-being.
  • Need for Improved Care: The survey underscores the need for better communication between patients and healthcare providers and more support for caregivers.

A new survey by the PD Avengers, a global alliance to end Parkinson’s disease, reveals that Parkinson’s disease significantly disrupts sleep for patients and caregivers—and uncovers key areas for improving care.

The “Surveying Late Evening Effects of Parkinson’s” (SLEEP) survey, conducted from March 15 to May 15 in collaboration with AbbVie, sheds light on the significant impact of nighttime symptoms on people with Parkinson’s and their caregivers. Responses from over 1,248 people with Parkinson’s and 286 caregivers across 27 countries, revealed the following key findings:

Nighttime Symptoms Among People with Parkinson’s:

  • Prevalence: 96% of respondents reported that Parkinson’ affects their sleep quality, with an average of 2.75 sleep disruptions per night.
  • Symptom Burden: On average, people with Parkinson’s reported dealing with nearly six different Parkinson’s symptoms (5.6) each night.
  • Common Symptoms: The five most common reported symptoms during sleep were: frequent awakenings (53%), insomnia (50%), bradykinesia (41%), rigidity (38%), and nocturia (38%).
  • Difficulty with Movement: 65% of people with Parkinson’s reported difficulty turning over in bed at night and this increased to 84% for those who identified as having advanced PD.
  • Gender Differences: Men reported higher instances of nocturia (43%), drooling (30%), and REM Sleep Behavior Disorder (28%), while women were more affected by insomnia (55%), joint stiffness (27%), and excessive sweating (28%).
  • Discussions on Sleep with Healthcare Providers: Nearly 30% people with Parkinson’s reported their healthcare provider did not engage in discussions about sleep and only 20% have received a diagnosis for a sleep disorder.
  • Regional Differences: North American respondents are more likely to receive a sleep disorder diagnosis (24%) compared to their European counterparts (13%).
  • Impact on Caregivers: Daily Functioning: A significant majority, 88%, of caregivers experience some level of sleep disruption due to their partner’s Parkinson’s disease, ranging from moderate to severe impacts.

Emotional and Physical Strain for People with Parkinson’s and Care Partner Relationship:

  • 44% of people with Parkinson’s report that nighttime symptoms significantly impact their care partner emotionally, while 36% of people with Parkinson’s report that their symptoms disrupt their care partner’s sleep and physical well being.
  • 40% of caregivers experience significant emotional burden, and 34% report significant sleep disruptions to assist with movement or medication.
  • Additionally, 32% feel constant concern for their care recipient’s well-being, leading to heightened vigilance and difficulty relaxing.

“The nighttime struggles of [people with Parkinson’s] and their caregivers are a silent crisis that demands attention. It’s not just about acknowledging these challenges but taking actionable steps to address them. Our commitment to ending Parkinson’s disease must be unwavering and all-encompassing, embracing every hour of the day and night,” says Larry Gifford, president and co-founder of PD Avengers, in a release.

Parkinson’s disease is the fastest-growing brain disorder in the world and impacts 11.8 million people. While PD is often characterized by motor symptoms such as tremor, muscle rigidity, and difficulty with movement, it also presents over 40 potential symptoms 4 with sleep, pain, gut health, and constipation. Many of these symptoms are hidden from others including anxiety, depression, and apathy.

Tips to Improve Sleep for Patients and Caregivers

To address these issues, the PD Avengers recommends the following actions:

  1. Improve Communication Between People with Parkinson’s and Health Care Providers: Encourage more proactive discussions about sleep issues to ensure that people with Parkinson’s receive comprehensive care.
  2. Support Caregivers: Establish respite care, support groups, and counseling services immediately to alleviate the immense emotional and physical strain on caregivers. They need relief and support, not just acknowledgment.
  3. Deploy Assistive Technologies: Promote the rapid adoption of assistive devices that enable people with Parkinson’s to manage nighttime symptoms independently, reducing caregiver intervention and improving sleep quality.
  4. Drive Education and Awareness: Increase education efforts among healthcare providers about the critical importance of diagnosing and managing sleep disorders in Parkinson’s. Equip people with Parkinson’s and caregivers with the knowledge to advocate for proper care.
  5. Advocate for Policy Change: Push for flexible work arrangements and financial assistance programs for caregivers who are financially strained due to their responsibilities. Policy change must support the well-being of both people with Parkinson’s and their caregivers.

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